10 ways to support those who have a hidden disability

Written on 1st Jul 2014 by Sylvia Lowery

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Our family has three members who have a variety of chronic  conditions. We have struggled with autism, EDS, Pots, Stroke, Diabetis, Cardiac Arrest and a few more. I am not writing this post for sympathy but to raise awareness. 

1. Believe them – if they say their child is awake all night believe them. It adds to the burden when you feel people think you are making things up. If you don’t understand or it doesn’t make sense do some research. There are a lot of conditions that are misunderstood.

2. Don’t use hurtful words like ‘mong’ or ‘retard’. Think before you speak. Words like this cause so much hurt and upset.

3. Don’t declare there is nothing wrong with their family member. Do you really think you can know when you might only see their child for a few hours on a good day and actually you missed the fact that their child spent most of that time hiding in a small room. If I am honest I don’t normally respond to this kind of comment. I just say an inward prayer for patience because I don’t want to be upset with people but that is an inner battle I have to have.

4. Smiling and looking happy doesn’t mean they are better. If you struggle with pain or anxiety all the time you can’t look sad all the time. People continually ask my daughter if she is better now. She lives with constant pain because she has eds and pots. She is so patient but she doesn’t know what to say. She stares at them and tries to smile but really she is embarrassed because not getting better isn’t seen as normal for a 15 year old.

5. Refrain from sharing the latest cure you have just read about in the paper or online. The family have more than likely tried everything and it just doesn’t work.

6. Don’t talk about how medication is all bad and if the sick person just gave up the medication they would just get better. This is distressing because it seem as though you think the condition is all the families fault. You taking a vitamin C tablet for a cold isn’t the same as a chronic condition where the symptoms can be treated but not cured. Pain relief does have terrible side effects, the family know this but perhaps the pain is just unbearable. We take a lot of vitamins and it helps but it is not a cure.

7. Don’t believe everything you read in the press. The press use sloppy statistics and will manipulate the truth to get a headline. If you want to know about a condition ask the family they will be happy to tell you what it’s actually like.

8. Do listen and ask how you can help. This means so much when you are a parent who is coping with a family member who has a hidden condition. I find those who really take the time to listen and understand are such a blessing to me. In our case like many other families we have more than one condition that affects our family.

9. Do spend time learning about the condition so that you can have a full understanding. Even the smallest gift or kindness is appreciated. One lady gave my other daughter some aromatherapy cream for her eczema this little kindness says much more than the gift. It says you care , sometimes when a family is coping with a lot we can feel that others don’t really care or notice and these little acts really touch us.

10. It is hard to believe that one family can have a number of members who are affected. This can lead to suspicion. I actually feel ashamed to admit we have so many problems. I feel like we must be failing in some way and I am scared to really say. Perhaps you are blessed to have no one in your family with a disability or illness. However there are a number of inherited conditions. As Alex speaks in a number of places I meet more and more families who are all affected by autism. Esther had EDS and Pots and I have met families with both parents and all the children being affected. I am inspired by these families, they are amazing, they never complain. They just accept it and get on with the business of coping. They help each other. Yet they have all had to cope with others judging them and accusing them of making things up. Please think before you make a judgement don’t add to the heavy burden a family is already carrying.

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